The world can be a much better place

Wednesday 3 May 2017

by Mansi Shah

As part of our wider conversation to inform the development of our new strategy we will be publishing a series of blogs reflecting on what great children’s palliative care should look like in 2028, what needs to happen to get there and what Together for Short Lives’ role could be in achieving that.

Today we hear from Mansi Shah who shares her aspirations for what great children’s palliative care could look like in 2028 from her perspective and work at Happy Feet Home Foundation in Mumbai, India – India’s first children’s hospice. You can find out more about Happy Feet Home Facebook page

Happy Feet Home Foundation

Happy Feet Home is coming close to completing three years in operation. What looks like a steady journey now was not the same when we first set out to start it. We were discouraged by a lot of people who said that India is not ready for a children’s hospice. They thought we were planning way ahead of our time. We started with limited knowledge in this field, zero funds and lot of speculation. What kept us going was the firm belief that this is the need, and while most people are not addressing it, something needs to be done about this.

Cherish the life we have while we are still livingSupport and encouragement only started pouring in after people saw the passion in us. In my opinion, I think a lot of this doubt comes from the discomfort we have with the concept of death. We don’t know how to deal with it no matter how prepared we think we are. Unfortunately when it comes to death due to a prolonged/life limiting illness, we just end up spending all our time, energy and finances on the treatment. We often forget to cherish the life we have while we are still living. We often forget to celebrate the moments we have and to capture them forever. And sadly enough, we live a life of regret only because we did not make the most of it while our loved one was with us.

The smallest coffins are the heaviestLike they say, ‘The smallest coffins are the heaviest’. It is indeed the worst thing to see a child pass away. The pain is unbearable and the void, irreplaceable.

At Happy Feet Home, we don’t have children who are on their final stages but they are all living with a life-limiting/life shortening illness. Having worked with them for almost three years now, I can vouch that all of us at Happy Feet Home believe that receiving palliative care does wonders to their emotional and psychological wellbeing. It helps the caregivers a great deal and equips them to be better caregivers.

Breaking taboos What I would hope for palliative care to be in 2028 is for it to be easily accessible to anyone and everyone who needs it. I also really hope that it does not have any taboo attached to it. I hope that we not only accept the final stages of life but learn to live a fuller life while we are in it.

Palliative care is everyone’s business 2028 should be a year when all the stakeholders come together to support palliative care and I also hope that it is more community based. More than organisations working in their limited capacities, it will be great if everyone makes this their business to provide a better care to other who might need it.

Sailing in the same boatOne of my biggest dreams for Happy Feet Home is that we should be able to create support groups of children who are sailing in the same boat, because I believe that nobody else can empathize better than the one who is dealing with the same thing or the one who has been through the same pain. If we have such support groups in all the nations then we are just coming together closer to fulfill our mission of providing excellent palliative care.

Finally, I really wish that over the years, we are more empathetic and thoughtful towards everyone whether or not in need of palliative care. I also wish that no children are abandoned by their parents or caregivers because they are exhausted because I genuinely feel that the world can be a much better place if everyone in this world has at least one person who loves them unconditionally!

Mansi Shah Happy Feet Home Foundation

What do you think? Tell us what you think of this vision for Children’s Palliative Care by posting a comment below. You can share more detailed comments by completing this short survey. You can also submit your own blog to support this series by emailing emma.dixon@togetherforshortlives.org.uk.

We are keen to hear from as many people as possible, so do share this blog with your stakeholders and networks. You can also engage with the conversation on Twitter, using the hashtag #forthe49000